Again. Regina has now the LOWEST pain tolerance ever. Last night she was awake crying screaming all night again. BUT THIS TIME it was due to back/hips/ tummy pain. She was not able to point out pain, because it was moving all over. It started last night after her MRI. When we were driving home she started crying because she can't sit and she hurts all over. I thought maybe it is a MRI contrast side effect. I gave her lot to drink. She seemed getting better. Around midnight she woke me up with loud AWWWW AWWW kind of cry. She is in bathroom trying to pee. Nothing hapened. And like that we stayed awake till it was time to wake up...
So we attended Gabriels Flag ceremony in his school and after that went to our local Mission Viejo ER. CRAP, what a mistake. We got LITTLE attention, NO SUGGESTIONS what might be wrong. NO PAIN MEDS, or no offers, and they wanted to discharge her while she was crying in pain....Well, urine test showed she has Bladder infection , and they gave her antibiotics ( IV kinds). SHE was doing better for 30 minutes and then she started crying again.....
LUCKILY Dr. Dhall from CHLA called just after I had major meltdown and was about to pull my hair out, since everything was just not right.
Well, Decadron might be reason why her tummy hurts more than regular and why she is soo moody and irritable with us.
So we are lowering herr dose. It is 4 pm and we are finally home. BUT to be honest this will be my last time to use MISSION ER. I noticed that "grown ups" , got amazing attention.. and that just angered me....GRRRRR.
And now the best news for a while :):):):):):) Dr. Dhall told us that Reginas Brain looks slilghty BETTER :):):):):) WOHOOOOOHOOOHOHOOO. :)
Most likely we will start new round of chemo around 18th of march, and after her Audiology result her Cisplatin dose will be adjusted too. Reginas hearing seems to be worse :):):):):
BUT right now Reginas Upset tummy is asking for some Chilis. I am sure , tonight will be another PAINFUL night. :(:(:( She is already complaining that her tummy hurts.
4 comments:
Dearest Diana,
I am just so happy yet worry on Regina's condition. But I am worry about you too. I hope you will keep strong inside and outside to go through all these. I will always pray for Regina, you and family.
Diana, I wish you were here... (you know where)
Hope there is no more sleepless nights! I wish!
I love you!
i hope you got some rest last night. i hope you both get some relief.
sometimes i forget there is another child that requires his mommy... i will say it again, you are amazing! and you are beautiful! these pics are great! thank you for sharing... and keeping us updated.
thinking of you... sending sleepy, happy, healthy vibes...
tiffani
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